Archive
New DDS background check law has delayed requirements
A new national criminal background check law in Massachusetts may well have a major, positive impact on services and care for people with developmental disabilities in the state.
But under the law, the background check requirement is delayed for many, if not most, current employees in the Department of Developmental Services system for more than four years, until January 2019. The requirement is delayed for a year and a half for prospective employees in the system.
The long-awaited law, which was signed by Governor Patrick last week, authorizes national criminal background checks for persons hired to work in an unsupervised capacity with persons with developmental disabilities. The law will ultimately require that both current and prospective caregivers in the system submit their fingerprints to a federal database maintained by the FBI. The law applies to DDS employees, employees of corporate service providers to the department, and caregivers over the age of 15 of persons living at home.
Up to now, persons hired to care for clients in the DDS system have had to submit only to an in-state criminal background check, which identifies only criminal arrests and convictions in Massachusetts, and does not identify any convictions a job applicant might have from another state. A national background check system will fill in that potential gap in the applicant’s history.
The new law’s fingerprint requirements, however, will be phased in through January 2019 for current employees, and will not take effect for new employees until January 2016. Another provision in the new law that raises questions appears to allow employees to be hired before the results of their background checks are obtained. That provision states the following:
Department-licensed, funded or approved programs and providers of transportation services on behalf of any department-licensed, funded or approved program may hire individuals without first obtaining the results of a state and national fingerprint-based criminal history check (my emphasis).
It’s not entirely clear to us what the intent of this provision is or what its impact might be. It appears to allow people to be hired before they are cleared through the FBI database. The provision does not specify a time frame for obtaining the background check results after an individual is hired.
Does this provision mean that even after January 2019, someone could be hired by DDS or a provider and could work for weeks or possibly months with developmentally disabled people before their background results are obtained or before their backgrounds are even checked? Furthermore, does the provision allow for that leeway even for in-state background checks?
I contacted the staff of the Legislature’s Judiciary Committee earlier this week to ask about that provision and the provisions phasing in the background check requirements until 2016 and 2019. It was apparently in the Judiciary Committee that these provisions were inserted. Interestingly, the Judiciary Committee staff person I talked to referred me to Philip Johnston Associates, a Beacon Hill lobbying firm, which was apparently involved in the final negotiations over the bill, apparently on behalf of DDS corporate providers.
On Tuesday, I spoke to a member of the Johnston Associates firm, who said she was unsure as well about the intent of the provision that appears to allow the hiring of individuals prior to checking their backgrounds, and that she would get back to me. I have not yet heard back from her. I also placed two calls on Monday and Tuesday to the state Department of Criminal Justice Information Services, which is in charge of administering the law. I have yet to get a return call from that department.
The Johnston Associates staff member said the providers and other advocates involved in negotiations over the background check legislation pushed for phasing in the fingerprint requirements due to concerns over the time needed to implement them. A member of the Association of Developmental Disabilities Providers expressed a concern in a news article last week that the new fingerprint requirements could prove burdensome to smaller provider agencies.
It is not clear to us though that more than four years is really needed to phase in the national background check program for current employees in the DDS system, or that a year-and-a-half delay is needed before requiring new employees to be fingerprinted. We’re skeptical that that much time is needed, partly because we’ve witnessed a lack of urgency on the part of both the Legislature and the administration for the past several years in just getting this law passed. It seems possible that that lack of urgency is being carried over into implementing the law’s requirements.
National background check legislation had been proposed each year for up to a decade by then Representative Martin Walsh, now mayor of Boston, before it was finally enacted this year. Each year, the legislation would get stuck in either the Judiciary or House Ways and Means Committees, or both, and then would die at the end of the session. The administration did little during that time to lobby for passage of the measure. As a result, Massachusetts has been only one of a handful of states without a national background check program for people with developmental disabilities.
Meanwhile, the federal government has stood ready to assist the state with grant money under the Affordable Care Act to help implement the new background check law; but Massachusetts has declined to apply for that federal money, which has available since 2010. The state has even been slow to implement national background checks for school teachers and children’s day care providers.
While we’re glad to see that the DDS national background check bill is finally law, we hope the administration now shows a true commitment and sense of urgency in getting it to work.
‘Real Lives’ bill is now law, but it raises many questions
The ‘Real Lives’ bill is now law, and it is somewhat better than the vehicle it was in danger of becoming for the financial benefit of corporate providers to the Department of Developmental Services.
But what has come out of the legislative process late last month is a compromise between two competing bill drafts, even the better of which raised some serious questions. The final compromise was apparently negotiated among key lawmakers in the House and Senate, with the input of a major provider-based organization, the Arc of Massachusetts.
The legislation introduces what is called “person-centered planning” in providing care and services to persons with intellectual and developmental disabilities. It is touted as providing individuals with more choice and “self determination” in the services they receive from the Department of Developmental Services.
One of the main thrusts of the new law is to provide developmentally disabled persons with control over their own “individual budgets” to pay for DDS services. The introduction of individual budgets is billed as a key departure from the current system in which DDS controls the budget process in contracting with corporate providers to operate group homes and provide other services.
But we think the development of these individual budgets is actually where this legislation runs into problems. Many, if not most, developmentally disabled people are not in a position to manage complex budgets involving state and sometimes federal funds or to make informed decisions about their own needs and services. As a result, the law provides that they can engage a “chosen planning team,” “financial management services,” and “independent facilitators” to help them do those things. These entities, some of which will be privately operated, yet state-funded, will work with each individual’s clinical care team to make those planning and financial decisions.
There are two major drawbacks to this approach. One is that the independent facilitators and financial managers will constitute a new layer of bureaucracy, which will mean higher costs to taxpayers as well as a managerial nightmare for DDS.
Who will actually determine, for instance, what a program participant’s individual budget actually is? The law states that DDS “shall negotiate with the financial management service provider uniform rates for each given unit of service, to be paid by each participant from the participant’s individual budget” (my emphasis).
Does this mean DDS is required to enter into negotiations with an undetermined number of private financial management services on behalf of thousands of individual clients?
Related to this is the question whether DDS actually knows what an individual’s total cost of care is, and whether the Department currently calculates that total cost. In the community-based system, these costs are spread over a number of budgets, including the DDS and MassHealth budgets. The Department’s contracts with group homes are based on only a portion of these costs, which are not necessarily specific to the individual residents.
In that respect, we think the Real Lives legislation would make more sense if it involved giving an individual and his or her guardian more authority simply to plan their services, and stopped there. There is no good reason that we can see to also give a program participant authority to manage and disburse state and federal money. That should remain a DDS function. Giving a developmentally disabled individual control over the disbursement of such funding could potentially open them up to financial exploitation. But the new law appears to give those disabled individuals that authority with the following language:
“…with self-determination, the participant has control over the annual budget, the participant is central to and directs the decision-making process and determines what supports are utilized and the service system is flexible, so the participant may tailor the participant’s supports to meet the participant’s needs…” (my emphasis).
The second major drawback in the Real Lives approach is related to the first. The law appears to leave the individual’s guardian almost out of the picture. The “participant” in the program is defined in the legislation as “an individual with disabilities receiving department services and, when appropriate, an individual’s parents, legal guardian, conservator or other authorized representative…” (my emphasis).
As we asked Senator Michael Barrett’s staff, when we were sent his version of the then bill for comments last January, who will determine when it is appropriate to allow an individual’s guardian or family to participate in their ward’s person-centered planning and self-determination program? We noted that the vague language in the bill could leave incapacitated individuals even more vulnerable to financial exploitation by persons other than their guardians or family members who seek to make decisions about their care or financial affairs.
We recommended that a statement be added in the bill making it explicit that in a case in which an individual has a legal guardian, the guardian would be considered the participant in the self-determination program. While Barrett’s office did produce a thoughtful redraft of the very flawed original version of the bill, our suggested language ensuring participation of guardians was not inserted.
The law does potentially give the guardian a consulting role in the development of his or her ward’s individual budget, but that role appears to be an indirect one that is based on a reference to the individual’s care plan or Individual Support Plan (ISP). In contrast is the much more central decision-making role that is given to the developmentally disabled individual himself or herself.
So, the upshot seems to be that while the law gives a central decision-making role to the disabled individual and possibly his or her financial management service, the individual’s guardian will have direct input only in cases in which someone, who is not specified, determines it is appropriate for the guardian to be involved. Otherwise, the guardian has, at most, a consulting role to DDS. This is very troubling to us.
Also, we had suggested that a statement be added to the definition of “self-determination” that participants and their guardians would be given an explicit choice among all available options for care, including state-operated facilities and group homes, provider-operated homes, shared living arrangements, and home-based care. That statement was never added either.
As we have pointed out in a number of posts, both state and federal law provide that developmentally disabled persons seeking services are entitled to a choice of all available types of care, including state-run and institutional care. But DDS routinely denies this choice to applicants for services, and presents provider-operated residential care as their only option.
Another serious problem with the Real Lives law is that the final compromise removed language from Barrett’s version which would have helped ensure that an advisory board created under the legislation is not dominated by corporate providers. We are glad to see, though, that an unwarranted “contingency fund” for the providers was taken out of the bill.
In the final analysis, we think clients, their guardians, and families should have choice over the services they receive, but they should not have to manage state-funded budgets to pay for them. State and local governments fund public school systems in the state, for instance. People have the choice of traditional public or charter schools, but families are not provided with pots of state and local funds from which they then pay the schools via private financial managers.
Service choice is already available to developmentally disabled persons through the ISP process, but it is less robust than it could be. As noted, there is no real opportunity provided to most developmentally disabled people under the current system or under the Real Lives legislation to choose the state-run care option. At the very least, the Real Lives law should be amended to correct that situation and to make the guardian’s role explicit in person-centered planning.
We hope these changes are made to the new law in the next legislative session.
Federal agencies ignore realities of care of the developmentally disabled
Some agencies within the Obama administration have an ideological bias against congregate care for the developmentally disabled that has apparently blinded them to the damage done to countless lives in the name of deinstitutionalization.
That bias, which is held as well by the Patrick administration in Massachusetts, is on display in an article written by a key former Obama administration official about the deinstitutionalization movement from the 1960’s to the present.
The article is by Samuel Bagenstos, former principal deputy assistant attorney general in the Obama Justice Department’s Civil Rights Division and a key litigator in deinstitutionalization cases.
Bagenstos acknowledges in the article, published in the Cardozo Law Review, that the past and pending closures of institutions such as the Fernald Developmental Center in Massachusetts have not resulted in adequate funding for community-based care. But Bagenstos declines to acknowledge the role his own former agency has played in the often checkered expansion of the largely privatized community system that followed the closures of state-run Intermediate Care Level facilities for individuals with intellectual and developmental disabilities (ICFs/IID).
Instead, he argues that if only families of developmentally disabled individuals see fit to team up with advocates of further deinstitutionalization, they can work together somehow to ensure that care will be adequate in the community. We aren’t buying it, and the VOR, our national affiliate, isn’t buying it either.
In a response to Bagenstos’s article, the VOR contends that:
Bagenstos shows no willingness to take responsibility for the tragedies that he and the other advocates caused to these highly vulnerable individuals. Nor have past failures moved Bagenstos to take a more reasoned approach to deinstitutionalization efforts, one that insists on building quality, community placements and adequate oversight before displacing fragile individuals from ICFs/IID.
Instead, closure advocates are turning to new “battlegrounds” (private facilities, nursing homes and adult care homes), without apparent concern for the hundreds of thousands of individuals on waiting lists for community services or the history of abuse, neglect and death that has befallen countless community-based individuals.
In an article this month in The Nonprofit Quarterly, Tamie Hopp, VOR’s director of government relations and advocacy, adds that among the results over the past 30 years of deinstitutionalization of the developmentally disabled are waiting lists in states for residential care that now number nearly 317,000 people, emergency rooms that “have become de facto urgent care clinics” for developmentally disabled people, and correctional facilities that are “replacement treatment centers” for some individuals who have both mental illness and developmental disabilities.
As Hopp points out, U.S. Senator Chris Murphy (D-CT) has called for a U.S. Department of Health and Human Services Office of Inspector General investigation to “focus on the prevalence of preventable deaths at privately run group homes across this nation and the widespread privatization of our delivery system.” The VOR has catalogued hundreds of media reports of abuse and neglect in privatized group homes around the country in recent years.
Yet key current and former officials in the Obama administration seem oblivious to all of this, and so does the Patrick administration in this state. As we have noted, the Obama administration’s National Council on Disabilities (NCD) now labels any facility with four or more residents an “institution,” and has called for the closure of all such facilities. The NCD does not appear to have put any thought into what would replace the care provided in those settings.
Meanwhile, the federal Centers for Medicare and Medicaid Services (CMS) has written new regulations to terminate Medicaid funding for any facilities that happen to be located on the grounds of state-run or private ICFs/IID or even near to them. And just this past week, President Obama signed a bill into law limiting placements for people in sheltered workshops, which the CMS considers to be inappropriate centers of congregate care. Fortunately, the Massachusetts Legislature acted last month to preserve sheltered workshops in this state for those who choose to remain in them.
For some within the Obama administration, the wishes and preferences of the individuals and families most affected by deinstitutionalization do not appear to be of importance. Since 2009, the Justice Department, while at least partly under Bagenstos’ leadership, has filed, joined, or participated in more than 40 lawsuits in at least 25 states to provide individuals what it considers to be “full community integration.” As a result, hundreds of people have been moved from ICFs/IID homes, regardless of whether they or their families or guardians wanted to close the facilities they were living in or not.
In his article, not only does Bagenstos neglect to acknowledge the suffering and damage that has been caused by these institutional closures, but he does not appear to understand the financial corruption that pervades the largely privatized system of care that has replaced the large institutions.
For instance, Bagenstos maintains that “deinstitutionalization advocates now are fighting to expand the amount of state money spent in the community—and, especially in tight budget times, to defend existing community services against cuts.” But this doesn’t appear to recognize that the most potent force for deinstitutionalization advocacy today is to be found among the corporate providers that have moved in to the vacuum created by the disappearance of ICFs/IID. They are actually fighting to expand the amount of state money going into their own pockets, particularly the pockets of the huge bureaucratic layer of corporate executives that run these companies.
Hopp points out that between 1977 and 2010, as ICFs around the country were being closed, the number of residential settings serving people with developmental disabilities increased by more than 1,500 percent, with most of these new settings being small and privately operated.
Bagenstos and many within the current administration also seem not to understand that the federal Americans with Disabilities Act (ADA) and the Olmstead v. L.C. U.S. Supreme Court decision both recognize the need for a range of services for the developmentally disabled, including institutional care for those who desire it. Bagenstos discusses the ADA and Olmstead only as potential legal avenues to boost funding for the community-based system. And he starts with an unproven assumption that community-based care is better in all respects than institutional care.
“Over time, an evidence base has developed that has both refined and demonstrated the superiority of these (community-based) service models,” Bagenstos states in his article. He includes no citation for this claim. In fact, in addition to the problems cited above of abuse and neglect in the privatized system, academic experts have drawn mixed conclusions as to whether people who have transferred from institutional to community-based settings have experienced improvements in the quality of their lives or care.
Bagenstos also appears off base in what he writes about the history of the litigation over the closure of Fernald. He writes:
When Massachusetts responded to fiscal concerns by seeking to close the Fernald Developmental Center, its oldest institution for people with developmental disabilities—even though it offered residents and guardians a choice of transferring to another state institution—Fernald parents sought to reopen a long-closed pre-Olmstead case [Ricci v. Okin] that had been settled in 1993. The parents argued that the closure actually violated Olmstead, because it deprived them of the opportunity to oppose placement in the community.
Bagenstos’s statements about the reasons for the reopening of the Ricci case are overly simplistic at best. The Fernald families alleged in 2004 that by instituting staffing reductions and budget cuts at Fernald, the then Romney administration was violating U.S. District Court Judge Joseph Tauro’s 1993 disengagement order in the Ricci case that required the maintenance of high standards for care at Fernald and in other ICFs. The families also alleged that the administration was re-writing residents’ care plans and failing to certify that the residents would receive equal or better care elsewhere.
Secondly, while the Patrick administration did offer the Fernald residents a choice of a different ICF, the concern among the families, starting prior to the Patrick administration, was that the ICF they moved to from Fernald might itself subsequently be closed, leaving them with the prospect of multiple moves. That concern proved to be well-founded in 2008 when the Patrick administration announced it was closing three additional ICFs in the state, out of six then remaining. Only one of the two remaining ICFs in the state was listed by the administration as not being on the closure list.
Bagenstos also mischaracterizes a bill filed by then Massachusetts Congressman Barney Frank that would have given guardians of persons with developmental disabilities the right to opt out of those lawsuits supposedly filed on their behalf by the Justice Department and federally funded legal aid agencies to close facilities in which those disabled individuals happened to be living. Frank’s bill would also have required the Justice Department to consult with the guardians in any investigations undertaken of those facilities. Bagenstos writes:
Evidently blaming the Massachusetts government’s decision (to close Fernald) on the pressures caused by the threat of litigation, Representative Barney Frank, who represented the district in which Fernald was located, responded by introducing legislation that would limit the ability of federally funded Protection and Advocacy agencies—the source of much Olmstead litigation—to bring cases that could lead to the closing and downsizing of institutions. Both VOR and AFSCME (a state employee union) have vocally supported this legislation. Though the legislation has not moved in Congress, the support by one of its most stereotypically liberal members for a bill that would limit public interest lawsuits highlights the unusual political alliances that continue to surround deinstitutionalization litigation.
In our opinion, Frank’s bill would not have limited any organization’s ability to bring cases to close institutions. As noted, it would only have given guardians a choice as to whether to participate in those suits.
We are glad to see that Bagenstos at least believes that the closures of ICFs will not necessarily save money in the long run. He states that:
Although studies of deinstitutionalization have found that people who move from institutions to the community can achieve better outcomes at lower cost, it is reasonable to expect that the cost gap will shrink as people in the community receive more services. This may be especially true because a significant part of the cost gap reflects differences in the wages paid to workers in institutional and community settings.
In the final analysis, we think, the major problem that the developmentally disabled face is not the threat of institutionalization, it is the lack of adequate care and services in the supposedly deinstitutionalized system. As Hopp notes:
The legal framework is in place to support individualized care and choice. Advocates must set aside efforts to eliminate options of care and work together to expand options. This begins with a commitment to serving each individual: true person-centered planning.
The problem with the approach advocated by Bagenstos and many within the Obama administration is that it advocates the elimination of options for people with disabilities. It is a one-size-fits-all approach to care and services, and that size appears to be steadily shrinking as Bagenstos and others in the administration promote smaller and smaller residential settings that no longer meet high standards of care.
The endless shuffle continues for the DDS national background check bill
Does anyone in the state Legislature or the Patrick administration really want to set up a national background screening process for people hired to work with the intellectually disabled in Massachusetts?
Apparently not.
Everybody likes to talk about how important it is to protect the most vulnerable among us from abuse and neglect. Yet the Legislature has been unwilling for years to pass national background check legislation, and the administration has been unwilling even to apply for federal funds that are available under ObamaCare to implement a national background check program.
So far this year, there’s not much reason to think anything is going to change, though there is always a faint hope. This year’s version of the national background check bill (H. 4125) was approved by the Judiciary Committee in late May after the measure had languished there for nearly a year and a half. But it was sent as usual to the House Ways and Means Committee. Every time the bill has been sent to House Ways and Means, it has died there. For years, the bill has been on an endless shuffle between these two committees.
Another piece of bad news for the legislation this year is that the only elected official in Massachusetts who has ever made a recognizable and visible effort to promote it is Martin Walsh, who is now mayor of Boston and no longer in the House of Representatives. For years, as a state representative, Walsh filed legislation to enact national background checks for Department of Developmental Services employees and employees of DDS corporate providers; and as recently as last July, Walsh testified in favor of his bill before the Judiciary Committee.
COFAR and a wide range of other advocacy groups for the developmentally disabled have long urged passage of the legislation. But other than Marty Walsh, we see no elected officials who seem particularly interested in enacting this legislation. You have to wonder why. Is there a special interest group out there that we’ve never heard of that is working to keep this legislation bottled up?
The administration claims to be in support of the bill, but they have not testified in favor of it in recent years, and, as noted, have never applied for available federal funding to implement a national background check program in Massachusetts. That funding, as noted, has been available under the Affordable Care Act since 2010. In that time, the federal Centers for Medicare and Medicaid Services has awarded more than $50 million to 24 states to design national background check programs.
National background checks involve matching a job applicant’s fingerprints against a federal database maintained by the FBI. Every advocacy group for the disabled that we know of agrees that state-only background checks — which is what DDS currently does in Massachusetts — are not sufficient in screening applicants for direct-care jobs because those checks do not turn up convictions for criminal activity in other states.
Massachusetts has apparently not been a leader in background screening of people who work with other vulnerable groups either. In January 2013, Massachusetts did enact a law requiring national background checks for school teachers and early education employees, but it was the last state in the nation to do so.
By the way, where are the candidates for governor and attorney general on this matter?
Please call the House Ways and Means Committee and ask them to finally approve H. 4125 and get it enacted; and please call the governor’s office and ask them to apply for funding available to implement the program.
You can reach the Ways and Means Committee at (617) 722-2990, and the governor’s office at (617) 725-4005.
Parents prohibited from even discussing a visit home with their son
When Stanley and Ellen McDonald tried to share and discuss a COFAR Blog post with their son, Andy, during a visit to his group home on June 22, the residential manager told them to stop, or their visit would be terminated.
The post was about Andy’s 47th birthday party, which was held at Carbone’s Restaurant in Hopkinton on June 6, and it quoted Andy’s wish as he blew out the candles on his birthday cake to someday be allowed to visit his boyhood home in Sherborn where his parents still live. Apparently, even expressing that wish was against the house rules. Andy and his parents are prohibited by a probate court order and by his residential provider and other authorities from even discussing the prospect of Andy ever visiting his hometown, even under supervision.
A probate court judge ruled in 2006 that Andy is sexually dangerous, but Stan McDonald maintains the ruling is based on misinformation and a misinterpretation of a police report from an incident in 1990 in which Andy threatened a neighbor. Andy has never been charged with a sexual offense; the neighbor has long since moved away, and clinical records indicate Andy has not exhibited aggressive behaviors in more than a decade.
Placing restrictions on subjects families can discuss with their loved ones in the Department of Developmental Services system is apparently not unusual. As we have reported, the family of Sara Duzan, another DDS group home resident, was cut off from all contact with her after they allegedly violated a prohibition on discussing care and conditions in the group home with her.
Stan McDonald, who is 78, maintains that Andy had not been expressing a wish on his birthday to return to his home to live, but just to visit his parents, and possibly to hear Stan play with his jazz band at the Sherborn Inn. But while Andy is allowed under his care plan to hear Stan’s band in other locations, not only can he never return to his hometown, he cannot even talk about his wish to do so.
Stan says that after Andy had finished reading the COFAR Blog post with Stan’s and Ellen’s help, the assistant residence manager “expressed what seemed friendly interest, so we gave her a copy.” A few minutes later, he says, the assistant manager handed him a phone with a call from the residence manager, “who told me to desist from talking with Andy about this or she would terminate the visit.” Stan says he reluctantly agreed to stop discussing the post, but “Andy and Ellen and I were deeply offended by the ignorance and insensitivity that was exemplified.”
Andy wants to believe he is a good person, Stan says, so forbidding him even from talking about a wish of great importance to him has affected his self-esteem. Andy’s resulting anxiety, Stan adds, is manifested in certain behaviors such as bolting his food until he sometimes chokes, and rapid and slurred speech.
Yet, even Andy’s psychiatrist will not discuss his desire to return to his childhood home with him. The group home’s solution to Andy’s anxiety is to medicate him, Stan maintains. The situation, he contends, amounts to “emotional abuse” of Andy.
“Andy has been given a life sentence for a crime he never committed – and with no opportunity to appeal,” Stan maintains.
Stan contends that it is the group home management and DDS itself that do not want to discuss the real issues in Andy’s care. At a meeting on June 20 to discuss Andy’s annual care plan, Stan says the meeting was abruptly terminated by a DDS official when Stan tried to discuss written comments he had handed out at the end of the meeting about what he views as issues in Andy’s care that have not been adequately addressed. Those issues, according to Stan’s written comments, include the following:
- Andy’s “extreme anxiety…(which is) directly related to 17 years of refusal of his wishes for visits home — wishes which he is denied even to express,” and the consequent medication to control that anxiety.
- A failure to implement provisions in Andy’s care plan for regular visits to his friend, Tom.
- Sub-standard dental care. His gums are bleeding. He has gingivitis and periodontal disease.
- A need for more regular exercise
- The group home is over-crowded with five residents.
Apparently DDS doesn’t want to discuss any of that. It’s bad enough that the DDS officials in charge of the care and services for Andy would not take the time to listen to his father’s concerns at Andy’s annual care plan meeting. But we particularly do not understand the policy that DDS and its providers apparently have of prohibiting clients in the system from talking about their deepest wishes and concerns, apparently even with clinicians and family members.
How can it serve someone’s therapeutic interest to keep a deep-seated wish or desire bottled up through an enforced order that they not even talk about it? Is it the clinical approach to care in the DDS system to forbid people from talking about sensitive subjects and then to medicate them to control their resulting anxiety? Clearly, that policy is not working in Andy’s case, and we don’t think it’s working in Sara Duzan’s case either.
Does the administration have a double standard in the care of the disabled?
As The Boston Globe reported last week, Governor Patrick has “unveiled an ambitious and potentially costly plan” to reform the way the state’s criminal justice system handles mentally ill people.
The governor has proposed both a major increase in staff at Bridgewater State Hospital and a new facility there where potentially violent patients could receive care, according to the Globe.
We support the administration’s commitment to expanding care at Bridgewater State. But we wonder whether this is yet more evidence of what appears to be a double standard on the part of the administration with regard to care of the mentally ill versus persons with developmental disabilities.
The administration appears to believe that congregate settings are necessary and appropriate for the mentally ill, but not appropriate for the developmentally disabled. In fact, we think Governor Patrick will be known as a builder of major institutional facilities for the mentally ill, yet as a closer of facilities for the developmentally disabled. This appears to us to reflect the absence of a comprehensive plan by this administration for care of all disabled people in the commonwealth.
Why are we building new state facilities and expanding state-run care for one group, yet tearing facilities down, eliminating an intensive care model, and privatizing most services for another group?
In addition to the plans for expansion of Bridgewater State for the mentally ill, the administration has taken major credit for the construction of the new Worcester Recovery Center and Hospital. That facility, which opened in August 2012 at a cost of $302 million, has 320 beds for persons with mental illness. The administration has billed it as “the largest non-transportation construction project (the state has) undertaken in more than 50 years.”
The administration has also apparently realized that intensive treatment models are necessary for the mentally ill. According to the Globe, the administration has declared that mentally ill people “should receive the appropriate care in the appropriate setting.” The Bridgewater proposal includes a plan for spending $10 million for an additional 130 full-time mental health clinicians at the complex. Patrick administration officials told the paper that if the Legislature approves this funding promptly, the additional staff could be working at Bridgewater by September.
The Bridgewater proposal further calls for $500,000 to study the possibility of retrofitting an existing state facility such as Taunton State Hospital or building yet another a new facility to treat and evaluate potentially violent people accused of committing crimes, according to the Globe. The plan gives no cost estimate for the new facility.
At the same time, the administration is closing or has closed four of six developmental centers for people with profound levels of intellectual disability and severe medical conditions, contending these centers are too institutional. Developmental centers provide an intensive level of care that must meet federal Intermediate Care Facility (ICF) standards. ICF rules specify more staffing and monitoring than do federal and state requirements for privatized, community-based care in group homes.
Even sheltered workshops are considered by the administration to be too institutional for the intellectually disabled, and the administration has announced plans to shut those down by June of next year. The administration is, at the same time, pouring additional funding into privatized group homes for the intellectually disabled, scattered in communities throughout the state.
The argument could be made that the administration views institutional care as appropriate for people with mental illness who are violent, and that’s why it is expanding facilities such as Bridgewater State. But that doesn’t explain the construction of the Worcester hospital center; and it doesn’t explain why the administration is eliminating the ICF care model at facilities for the developmentally disabled such as the Templeton Developmental Center, where many people with behavioral problems live.
The alleged assault by a Templeton resident that caused the death last year of Dennis Perry shows that even that facility may not be fully equipped to meet the needs of all the people who live there, and keep them safe. And yet, the administration is closing Templeton as an ICF and converting the facility to group homes, which will only reduce the level of staffing and supervision there. Also, the attempted rape of a woman by a resident of a group home in Chelmsford in 2011 shows that there are intellectually disabled persons with potentially violent impulses who live in the DDS community system.
It has been argued that another difference between facilities for the mentally ill, such as the Worcester hospital center, and developmental centers for the developmentally disabled is that the Worcester facility is meant to help people make a transition to independent living in the community, whereas developmental centers are not intended to do so. Therefore, according to this argument, the developmental centers should be closed, and the remaining system will be devoted either to serving all disabled people in the community or helping them get there.
Our response to that argument is that we have consistently stated that residents of developmental centers who want to benefit, or can benefit from community-based care should be encouraged to do so. As far as we know, there has never been any rule or policy that prevented anyone who wanted to leave a developmental center from doing so and moving into the community system.
As we argued in connection with the Chelmsford group home incident, the real issue is the care model. The administration wants to eliminate the intensive, ICF care model for people with developmental disabilities. The administration does acknowledge that people with mental illness should receive the appropriate care in the appropriate setting. And they appear to understand that the community system is not the appropriate setting for all mentally ill people. But for some reason, the administration hasn’t yet figured out that the community system isn’t the appropriate setting for all people with intellectual and developmental disabilities either.
We do believe that one day, the state will come to realize that institutional care for a certain segment of the developmentally disabled is needed, and there will be an effort to reconstruct our institutional facilities for them. Unfortunately, we’re making that future job much more difficult and expensive by tearing down the system that we have had in place and which we spent so much money to upgrade from the 1970’s onward.
Pelletier case reversal shows gov’s power to affect guardianship cases
The Patrick administration has dramatically reversed itself in the Justina Pelletier case, and asked a judge to reunite her with her family, The Globe reported this week.
I think this reversal shows the power that Governor Patrick has to intervene in these cases. He should do the same with the Duzan and McDonald cases, in which the Department of Developmental Services has similarly supported draconian restrictions on contact by family members with loved ones in the DDS system.
Justina Pelletier spent nearly a year in a locked ward in Boston Children’s Hospital after doctors there disagreed with the family’s diagnosis that Justina was suffering from mitochondrial disease. The Children’s Hospital doctors claim her illness is psychological, and as a result they got a judge to agree to award temporary custody of her to the state Department of Children and Families.
Late last week, DCF reversed its longstanding opposition to reuniting Justina with her parents and filed a request with the judge to allow her to return home. The Globe noted that Executive Office of Health and Human Services Secretary John Polanowicz played a personal role in trying to broker a resolution of the case. There is no doubt in my mind that Polanowicz was acting on orders from the governor and that the governor was starting to view the Pelletier case as a political liability for himself and wanted to see it resolved.
The state, human services and health care providers, the courts and their appointed guardians and other authorities have enormous coercive power over families, particularly when it comes to making decisions about care for persons with illnesses or disabilities. This power is often exercised without restraint even though federal law explicitly states that families should be considered the “primary decision makers” in the care of loved ones with disabilities. But that raw exercise of power does come with some political risks if the case has a high enough public profile, and the Pelletier case certainly has had that.
Unfortunately, the mainstream media has so far been uninterested in looking into the Duzan and McDonald cases and potentially others like them. As a result, those cases have not been resolved.
The state’s power to intervene in family affairs is a sensitive political issue that politicians apparently don’t want to involve themselves with unless they are pushed into it through public pressure. I’ve asked two candidates for statewide office in Massachusetts, who have touted their political independence, for their view on the Pelletier case — Don Berwick, who is running for governor, and Maura Healey, who is running for attorney general. (I asked Berwick the question in an online “town hall” meeting that he held a couple of weeks ago, and I posed the question to Healey as a comment in a blog post about her.) Neither candidate has responded.
Since I “participated” in Berwick’s town hall event, I do get constant requests from the campaign for money. But personally, before I support a candidate, I want to see that they have the political fortitude to answer a question about the Pelletier case or a case like it.
Our proposal to Senate Ways and Means to redirect some DDS funding in Fiscal Year 2015
Governor Patrick and the state House of Representatives have specified funding for the Department of Developmental Services budget for the coming fiscal year that is way out of balance.
Budget legislation proposed by the governor and approved so far by the House would raise the level of funding to DDS corporate residential providers to more than $1 billion. That’s an increase to the providers of more than $140 million, or more than 16 percent, over current-year spending in FY 2015 dollars. At the same time, both the governor’s and the House budgets would either cut or provide much more meager increases for most other DDS line items.
Here’s a proposal to the Senate Ways and Means Committee to restore some balance to DDS funding. As noted below, we are suggesting to the Ways and Means Committee, which is now considering the entire state budget, that at least part of the proposed increase in the Community Residential (corporate provider) line item be redirected to other DDS line items.
We have calculated that if the governor’s proposed increase in the Community Residential line item were reduced by just 2.1 percent – to a 14.7 percent increase – the Legislature could re-direct close to $18 million of the governor’s $145 million increase to the state-operated group homes, DDS service coordinators, the Autism Division, Turning 22 program, Respite and Family Supports, and the remaining developmental centers in the state.
COFAR’s proposed changes in DDS line items for FY ‘15
| Suggested decreases from gov’s FY ’15 budget numbers | Percent inc. from FY ’14 | Suggested increases from gov’s FY ’15 budget numbers | Percent inc./dec. from FY ’14 | ||
| Community res. (providers) | ($18,142,085) | 14.7% | State-operated group homes | $6,755,404 | 10.0% |
| Adm. (service coordinators) | $2,714,544 | 5.0% | |||
| Facilities | $6,254,933 | -7.7% | |||
| Autism Div. | $446,207 | 6.0% | |||
| Turning 22 | $460,003 | 5.0% | |||
| Respite Family | $1,136,399 | 5.0% | |||
| Total | $17,767,489 | ||||
The following are the details of our proposal:
Community Residential: FY ’15 budget line item 5920-2000: 14.7 percent increase
Both the governor and the House have proposed a disproportionately large increase in this line item for the coming fiscal year. We would urge the Senate Ways and Means Committee to propose a lower increase.
The governor proposed a $145 million, or 16.8 percent, increase in Community Residential funding in FY ’15 dollars. The proposed increase would bring the line item to $1.009 billion. This would amount to a 63.7 percent increase in funding for the providers since FY ’07.
On April 30, the House approved a slightly lower increase in the line item to $1.006 billion – still a 16.4 percent increase from the current year in FY ’15 dollars.
If the governor’s proposed increase was reduced by just 2.1 percent in this line item, it would save $18.14 million in FY ’15 dollars, which could be directed toward other line items that have been proposed for little or no increase in funding, or else are slated to be drastically cut, such as the facilities line item.
We would note that our proposal would still allow for a 14.7 percent increase in funding for the Community Residential line item, which would bring the line item to $990.7 million in FY ’15 dollars in the coming fiscal year. This reduction in the line item increase to 14.7 percent would allow for the following increases, or reductions in proposed cuts, in the following line items:
State-operated Residential 5920-2010: 10 percent increase
Both the House and the governor have specified a $12.6 million, or 6.5 percent, increase in funding for DDS state-operated group homes, to $206.3 million. We would urge the SW&M Committee to increase funding for this line item by an additional 3.5 percent, which would add $6.7 million to the amount proposed by the governor in this line item.
DDS data show that close to 42 percent of the 372 individuals moved out of developmental centers in the state since 2008 were placed in state-operated group homes. Just 13 percent of those individuals went to provider-run group homes. (We’ll say more about this in an upcoming post.)
Since 2008, 38 new state-operated group homes have been built in the state, but 3 have been closed or converted to provider-operated homes. DDS has projected that it will build an additional 6 state-operated group homes, but will close or convert 5 state-operated facilities to provider residences. Meanwhile, 157 new provider-operated group homes have been built since 2008.
Additional funding is needed for the state-operated group home system to preserve it as a choice for people waiting for residential care in the DDS system.
State facilities 5930-1000: Reduction from a 12.7 percent cut to a 7.7 percent cut
The governor proposed a $15.8 million, or 12.7 percent, cut in the developmental centers line item for FY ’15, to $109.2 million. The House approved even a deeper cut of 13.5 percent. Since FY ’07, the line item will have been cut by close to 47 percent if the governor’s FY ’15 budget is adopted.
The administration is dismantling the developmental centers; however, since 2008, more than 45 percent of the individuals moved out of the centers have been sent to either the remaining Wrentham or Hogan developmental centers. Some funding should be restored to this account to ensure that current conditions in the remaining centers are maintained.
DDS administration 5911-1003: 5 percent increase
The governor proposed just a $551,000 increase in the DDS administrative account in FY ’15 dollars, to $65.9 million, which is less than 1 percent in inflation-adjusted numbers. The House approved even a smaller increase – just 0.43 percent.
The DDS administrative account pays for service coordinators, who are being phased out of their jobs as the administration and Legislature look to award service coordination work to corporate providers. Providing just a 5 percent increase in this line item would add $2.7 million to the amount proposed by the governor.
Autism Division 5920-3010: 6 percent increase
Both the governor and the House specified virtually no increase in the Autism Division line item, which amounts to a cut of 1.8 percent in FY ’15 dollars. Given the growing public awareness of the prevalence of people with autism in the population, it is troubling that neither the administration nor the Legislature appear to have placed a priority on funding this line item.
COFAR would suggest providing for a 6 percent increase in the Autism Division line item for FY ‘15, which would add $446,207 to the governor’s proposed amount.
Respite family supports 5920-3000: 5 percent increase
Both governor and the House specified a 2.9 percent increase in this line item, which would bring it to $54.9 million in FY ’15. The line item has been constantly under-funded and would be 12 percent lower in FY ’15 dollars than it was in FY ’07 if the governor’s budget is approved.
COFAR is suggesting a 5 percent increase in funding for this line item, which would add $1.14 million to the amount proposed by the governor and the House.
Turning 22 5920-5000: 5 percent increase
This line item has also been constantly under-funded for many years. Both the governor and the House specified no increase in funding for the line item for FY ’15, which amounts to a 1.9 percent cut in funding in FY ’15 dollars.
A 5 percent increase in funding for this line item would add $460,000 to the amount specified in the governor’s and the House budgets.
Our proposal emphasizes family choice
We think this proposal to redirect some DDS funding is consistent with our long-standing position that individuals and their families — and not the providers — should have the primary say in the type of care and services they receive. Families have consistently indicated, for instance, that they prefer state care to care provided by corporate providers. Our proposal would redirect millions of dollars to neglected or underfunded state-operated programs and services.
For that reason, we are not supporting the providers’ call for an additional $5.5 million increase in the DDS community day and work account (5920-2025) because the providers want the additional money to be used to transfer intellectually disabled persons from sheltered workshops to day programs that they run. COFAR is supporting the preservation of sheltered workshops in the state for those who choose to remain in them.
Finally, given the lack of adequate oversight of the DDS contracting system, our proposal to redirect DDS funding would at least reduce some of the increase that may well go straight into the pockets of the corporate executives of the provider companies. We hope the Ways and Means Committee will consider our proposal before releasing their version of the budget this week.
It’s time to stop playing budget games with the ‘Real Lives’ bill
Once again, proponents of the ‘Real Lives’ bill have attempted an end-run around the normal legislative process by inserting the measure into the state budget bill in the House.
As we’ve pointed out many times, while the Real Lives bill is intended to provide intellectually disabled persons with choice and “self-determination” in obtaining services from the Department of Developmental Services, it has been drafted with a number of provisions that have turned it into a vehicle to benefit DDS corporate providers.
Using the same tactic he employed last year, Rep. Tom Sannicandro, the perennial sponsor of the proposed legislation, inserted the measure into the Fiscal Year 2015 budget bill, which was debated last week in the House. Only this time, Sannicandro and the providers appear to have ignored a thoughtful re-draft of the bill by state Senator Michael Barrett that is reportedly due to be approved by the Children, Families, and Persons with Disabilities Committee any day now. In his redraft, Barrett, who is Senate chair of the Children and Families Committee, removed the overtly provider-friendly provisions from Sannicandro’s version.
Sannicandro seems to be continuing to file his version of the bill at the behest of the Association of Developmental Disabilities Providers (ADDP) and the Arc of Massachusetts, which don’t appear to like Barrett’s redraft. That appears to be because Barrett’s redraft includes a provision intended to prevent those organizations from benefiting financially from the legislation.
We’ve blogged many times about what we see as serious conflicts of interest posed by Sannicandro’s version of the bill, including the fact that it would put the Arc and ADDP on an advisory board created to help DDS develop the self-determination program, and would establish a “contingency fund” that would compensate providers financially when residential clients leave them for other providers (effectively paying them for not providing services). Barrett’s redraft not only removes the contingency fund as well as all references to the Arc and the ADDP from the bill, it states that more than 50 percent of the advisory board must be made up of individuals who are financially independent of any DDS provider.
Yet, the vote in favor of Sannicandro’s amendment in the House last Wednesday was unanimous. We can only hope that most of the 150 House members who voted for Sannicandro’s budget amendment were not aware of Sen. Barrett’s redraft. But certainly Sannicandro has known about Barrett’s redrafted version. After all, he was invited by Barrett’s staff earlier this year — just as we, the Arc and ADDP were — to comment on the redraft.
I talked on Tuesday to a member of Sannicandro’s legislative staff, who said he didn’t know what Sannicandro’s position is on Barrett’s redraft. The staff member, however, did maintain that passage of Sannicandro’s version of the bill as part of the budget would not necessarily “cut off” passage of Barrett’s version of the bill. But I didn’t receive a clear answer from the staff member as to why Sannicandro would file his version of the bill as a budget amendment if he is not opposed to Barrett’s version.
We hope Sannicandro’s version of the bill will not appear in the Senate budget as it did in the House. We don’t think any version of this complex bill should be decided as part of the budget debate. A staff member in Barrett’s office said this week that the Senate leadership is aware “we’ve (Barrett and his staff) worked hard on our redraft.” The staff member said they were not aware of anyone planning to file an amendment to the Senate budget similar to Sannicandro’s.
We have a number of concerns even with Barrett’s version of the Real Lives bill. But it’s a lot better than Sannicandro’s version, and it is, moreover, moving through the appropriate legislative process.
Autism definition and commission bill raises some concerns
Process does matter, and we have a number of concerns about what happened to the process in the surprise adoption by the state House of Representatives last week of a major piece of legislation affecting people with autism in Massachusetts.
The bill (H. 4047), which was passed by the House on April 16, ties together a number of separate pieces of legislation, including a bill that would expand eligibility for state services both to persons with autism and a condition called Prader-Willi Syndrome. The combined bill also includes language from a separate bill that would establish a permanent state autism commission in Massachusetts (H. 3777).
We acknowledge the good intentions of the leadership in the House in trying to extend state services potentially to thousands of people with autism who currently do not qualify for care from the Department of Developmental Services because they don’t meet the Department’s definition of intellectual disability. We also have no objection to the establishment of a permanent autism commission.
But the omnibus bill, as it is being referred to, raises a number of concerns:
1. H. 4047 adopts a restricted definition of developmental disability that, as we have previously noted, leaves out people with many types of disabilities other than autism and Prader-Willi Syndrome, which is a condition often associated with autism. That restricted definition was a compromise, negotiated between DDS and a small group of legislators and advocates. It has not had a public hearing and may violate both the federal Rehabilitation Act and the Massachusetts Constitution, both of which prohibit discrimination solely on the basis of disability. Among the organizations withholding support for this restricted definition, in addition to COFAR, is the Disability Law Center.
2. The bill as a whole does not appear to have been considered by the Children, Families, and Persons with Disabilities Committee, which is the main committee of cognizance in the Legislature over DDS-related issues.
3. The original legislation establishing the autism commission (H. 3777), which was incorporated into H. 4047, does not appear to have been considered by the Children, Families and Persons with Disabilities Committee either. That previous bill appears to have gone from the State Administration Committee to the House Ways and Means Committee before being incorporated into H. 4047, without ever coming before the Children and Families Committee.
Our main concern about H. 4047 is that, as currently written, it would appear to violate the federal Rehabilitation Act (29 U.S.C., Section 794) and Article 114 of the Massachusetts Constitution. The bill specifies DDS services for certain developmental disabilities but not others, such as cerebral palsy, epilepsy, spina bifida, and traumatic brain injury, and cognitive impairments such as Williams Syndrome. This, on its face, would appear to be discriminatory and could potentially invite lawsuits.
H. 4047 defines “developmental disability” as a “severe, chronic disability of an individual 5 years of age or older that is attributable to mental or physical impairments resulting from intellectual disability, autism or Prader-Willi Syndrome.” Prader-Willi Syndrome is a condition often associated with autism.
State law currently restricts eligibility for services from DDS to persons having an “intellectual disability” as measured by an IQ score of approximately 70 or below. Intellectual disabilities are considered a subset of developmental disabilities.
Currently, thousands of people in the state are developmentally disabled in that they are unable to care for themselves or otherwise function adequately in society; yet, many of them are ineligible for services from the state because they do not have an intellectual disability. However, even though it excludes thousands of people from DDS eligibility, the current eligibility standard is, in itself, not necessarily a violation of the Rehabilitation Act or the state Constitution. That’s because it is based on an IQ threshold above which an individual is not considered by DDS to be intellectually disabled.
Ironically, in expanding the DDS eligibility statute to include people with autism and Prader-Willi Syndrome, the state may be opening itself up to a lawsuit because the distinction between disabled and non-disabled will no longer be based on a clear standard of measurement but rather on what appears to be an arbitrary list of developmental conditions. If you happen to have the right condition, i.e., autism or Prader-Willi Syndrome, you will get DDS services; but if you happen to have cerebral palsy or Williams Syndrome, you won’t get them.
Under a previous eligibility expansion bill that both COFAR and the DLC supported, developmental disability was defined as a condition “attributable to a mental or physical impairment,” which results in “substantial functional limitations” in three or more “major life activities.” Those activities included self-care, receptive and expressive language, learning, mobility, self-direction, a capacity for independent living, and economic self-sufficiency. Like the current DDS eligibility standard, that previous definition of developmental disability attempted to distinguish between disabled and non-disabled persons. It did not arbitrarily select some disabilities for inclusion and exclude others.
We understand the DDS’s concern that if eligibility for services is opened up to all persons with developmental disabilities, the state may be unable to afford the resulting costs of care. But adopting a seemingly arbitrary list of those who will be eligible and those who will therefore be excluded doesn’t seem to us to be the right solution.
Other states have found acceptable solutions to this problem, and we think Massachusetts should seek to join them. In the meantime, we hope the Senate will send H. 4047 back to the Children and Families Committee, which can at least subject all of the provisions in the proposed legislation to a public hearing.
COFAR blog 